Went to UCSF Neuro

[Zacksmomi]

Of course I had just had a solumedrol treatment and was in my "top form" when the I got to the Dr.  My neuro was not happy about me getting treatment before going to UCSF, but I was in a bad flare,  losing the ability to walk, and he figured the appt would be a month or so away.  Oh no they call and schedule me for 10 days after my last day of Solumed.  Lucky me to get a fast appt I guess :)

So the neuro says he sees NO weakness or spasticity in my legs and my gait is close to perfect.  I am super excited (heavy sarcasm here) that he will be filling out my report as such being that I am fighting for permanent disability.  I came in on a cane and I think I heard him tell the intern to give me a disability rating of 2.  I will be calling my neuro today to get a copy of that report as soon as it comes in.

I asked him wheter I would do damage to myself if I pushed through fatigue for a day and suffered the consequences for 3-4 days. for example, I live in the Sierra Nevada Mtns, if I am feeling great I like to go for a little hike.  He actually said, "well just limit your hike from 10 miles to like 3-4 instead"

3 miles??? Is he kidding.  So my neuro was right in saying he wanted this UCSF Dr to see me at my worst, but we didn't really have a  choice in the matter.  I didn't want to roll in there in a wheel chair.  The UCSF Dr did say that I have had way more flares than he would like to see on a DMD and we had a long discussion about my options.  

He is putting my official MS start dx at age 33 (dec '08) He did this for the paperwork for the meds, and agrees that there may have been some issues prior to that, but that we don't need to worry about it now.
We are going with Tysabri.  YAY NO MORE SHOTS!!! We discussed the dangers, but he said that the DMD pill should be avail by Dec and that we can do Tysabri for a year with no concerns.  If we have to go long term we will discuss that later.  

He is running a battery of tests (7 vials of blood) including sjrogen's syndrome, celiac disease, and recheck of my ACE for sarcoid (which he says I do not have Thank goodness) vit d, B12 and a few other typical tests.  

Good news is, there may be more than MS causing all these probs I am having and maybe we can fix some of them.  
The bad news is, I obviously have several auto immune diseases.  

Has anyone ever gone to an immunologist???  I am thinking that is my next step.  

Ok so that is my update.  I will post more detail about the appt in my journal later today.

Talk to you soon
D

[addicted2harleys]

Hey D-

You had been on my mind in the last couple of days and I was wondering how you were and if you had been to the new neuro yet.  

I am glad to see that you are feeling a little better.  I know you were having a really rough time of it.  And I am glad you don't have to have anymore shots and that sarc is out of the picture for you!

That is really good news about the fingolimod, too!  Definitely post what you find out about it.  Heck, Dec. will be here before we all know it.  ;0)

Good to see you back,
Addi

[Zacksmomi]

Thanks for the support girls.  It is so hard to judge Dr's thoughts sometimes.  I am dying to see the report he sends my neuro.  My appt is July 21 but I am on cancelation list.

I tried Rebif starting March '09 and due to site reactions switched to Betaseron Dec '09.  So I was on interferon for about 16 months.

About the DMD pill, fingolimod is the one we discussed.  Whatever board that meets before they present the drug to the FDA for final approval voted 25-0 in June to go forward.  I don't understand what that means, but basically it gives it a good chance for approval from the FDA and the UCSF Dr figures by Dec it should be on the market. I am going to start researching it and I will post what I find.

Oh and to Redflame:  there is a disability rating scale of 1-10 1 means athletic and 10 means bed ridden.  They measure based on mobility. A 1 is basically and athlete so a 2 would be just below athletic which is a laugh.  It was obvious the intern disagreed with whatever they were discussing but did not want to argue.  I will see what the report says.  I could be totally mistaken about what I thought I heard who knows.

D

[sllowe]

Hey D,

My goodness. Yes, you should of been at your worse, but I am glad to hear that some more labs will be run to see what if anything else is compounding your MS dx. I really hope there is nothing else though, unless it's something curable, durrnit!

You sound good about the Tysabri convo - excellent!  Remind me though how long you were on a DMD?  I'm forgetting.

Oh, one more thing, he sounded hopeful about the pill huh? I'm surprised, but please do tell us more if he said more about that. I'm very curious.

ttys,
Shell

[RedFlame]

Wow, what an experience you had!

I'm sorry to hear that the timing was thrown off like that!  Is there any possibility that the doc at UCSF was being 'tongue in cheek' or facetious?  I think it's just awful that he said that.   The fact that he discussed the many exacerbations you have had makes me think that he does know that you are too disabled to do any hiking.  

What is level 2 disability?  

I am happy for you that you can at least get some treatment though.  Maybe you have some illnesses that can be fixed.  That would be great!!